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1.
JMIR Cancer ; 10: e48465, 2024 Oct 03.
Article in English | MEDLINE | ID: mdl-39361371

ABSTRACT

BACKGROUND: Family caregivers of individuals with gynecologic cancer experience high levels of distress. Web-based caregiver support interventions have demonstrated efficacy in improving caregiver outcomes. However, the lack of portability could be a limitation. Mobile health (mHealth) apps could fill this gap and facilitate communication between patient-caregiver dyads. OBJECTIVE: We sought to obtain information on desired usage and features to be used to design an mHealth self-management support app targeting both patients with gynecologic cancer and their caregivers. METHODS: We conducted Zoom focus groups with women who had been treated for gynecologic cancers (ovarian, fallopian, primary peritoneal, uterine, endometrial, cervical, and vulvar); patients were also asked to invite a self-identified "closest support person" (caregiver). A semistructured focus group guide was used to elicit information on patients' and caregivers' perceived gaps in information and support, desired features of an mHealth app, and interest in and preferences for app usage. After transcription, rapid qualitative analysis using a thematic matrix was used to identify common themes across groups. RESULTS: A total of 8 groups were held. The final sample included 41 individuals with gynecologic cancer and 22 support persons or caregivers (total n=63). Patients were aged between 32 and 84 years, and most (38/41, 93%) were White and married. For caregivers (n=22), 15 (68%) identified as male and 7 (32%) as female, with ages ranging between 19 and 81 years. Overall, 59% (n=13) of caregivers were spouses. Questions geared at eliciting 3 a priori topics yielded the following themes: topic 1-gaps in information and support: finding relevant information is time-consuming; patients and caregivers lack confidence in deciding the urgency of problems that arise and from whom to seek information and guidance; topic 2-desired features of the mHealth app: patients and caregivers desire centralized, curated, trustworthy information; they desire timely recommendations tailored to specific personal and cancer-related needs; they desire opportunities to interact with clinical and peer experts through the app; and topic 3-interest and preferences for app usage: need for private space in the app for patients and caregivers to get information and support without the others' knowledge; patients and caregivers desire having control over sharing of information with other family members. CONCLUSIONS: Designing a single mHealth app to be used by patients and caregivers presents unique challenges for intervention designers and app developers. Implications of the study suggest that app developers need to prioritize flexibility in app functionality and provide individuals the ability to control information sharing between patients and caregivers.


Subject(s)
Caregivers , Focus Groups , Genital Neoplasms, Female , Self-Management , Telemedicine , Humans , Female , Caregivers/psychology , Genital Neoplasms, Female/psychology , Genital Neoplasms, Female/therapy , Genital Neoplasms, Female/nursing , Middle Aged , Self-Management/methods , Self-Management/psychology , Adult , Aged , Male , Mobile Applications
2.
JMIR Res Protoc ; 13: e64673, 2024 Oct 02.
Article in English | MEDLINE | ID: mdl-39357051

ABSTRACT

BACKGROUND: Older adults are at high risk for toxicity due to cancer treatment and increased risk for adverse events related to chemotherapy-induced nausea and vomiting (CINV). Unfortunately, older adults report multiple treatment-related symptoms but use few strategies to self-manage these symptoms due to erroneous beliefs related to the effectiveness of commonly taught self-management strategies. We developed a novel serious game, Managing at Home (MAH), to help older adults learn how to effectively self-manage CINV at home. OBJECTIVE: This study has 2 aims. Aim 1 is to examine changes in CINV severity, self-management behaviors, functioning, quality of life, cognitive representation, and health care use within the intervention group from baseline (T1) to completion of the study (T6). Aim 2 is to determine the efficacy of the MAH intervention by comparing differences in primary outcomes (CINV severity and health care use) and secondary outcomes (self-management behaviors, functioning, and quality of life) between the intervention and control groups at each follow-up visit (T2-T6) and completion of the study (T6). METHODS: This is a longitudinal randomized clinical trial. We will collect data from 500 older adults receiving cancer-related chemotherapy at baseline (T1) and at each treatment cycle until cycle 6 (T6). Participants will be enrolled if they are 60 years or older of age, are newly diagnosed with cancer, being treated with any chemotherapy agent with moderate or high emetic potential, are on a 2-, 3-, or 4-week treatment cycle, are proficient in English, and have a telephone. Previous diagnosis or treatment for cancer, end-stage disease with less than 6 months to live, and uncorrected visual or hearing impairment are exclusion criteria. RESULTS: This study was funded in September 2022 and received institutional review board approval in October 2022. As of July 2023, the enrollment of participants is ongoing and currently has 130 enrolled participants. Data collection and analysis will be complete in 2027. CONCLUSIONS: This study addresses self-management of CINV in older adults using an innovative serious game. The MAH intervention uses simulation and gaming technology to engage older adults in active learning in order to reframe erroneous perceptions about symptom self-management. If shown to be effective, it can easily be adapted to include other cancer-related symptoms or other chronic illnesses. TRIAL REGISTRATION: ClinicalTrials.gov NCT05838638; https://clinicaltrials.gov/study/NCT05838638. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/64673.


Subject(s)
Antineoplastic Agents , Nausea , Neoplasms , Vomiting , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Antineoplastic Agents/adverse effects , Nausea/chemically induced , Nausea/prevention & control , Nausea/drug therapy , Nausea/therapy , Neoplasms/drug therapy , Quality of Life/psychology , Self-Management/methods , Video Games , Vomiting/chemically induced , Vomiting/prevention & control , Vomiting/drug therapy , Randomized Controlled Trials as Topic
3.
Front Endocrinol (Lausanne) ; 15: 1469471, 2024.
Article in English | MEDLINE | ID: mdl-39351525

ABSTRACT

Digital innovations provide novel opportunities to individualize a person's care to best match their lifestyle needs and circumstances and to support them as they live their daily lives with diabetes. These innovations also serve to provide actionable data and insights for the care team giving them a "Webb telescope-like" view into their individual self-management journey, allowing them to see what cannot be seen during infrequent and limited office visits, thereby facilitating collaboration and communication to optimize the care plan on a timely basis. Technology advances are enabling diabetes care to transition from episodic, synchronous, primarily in-person care to include synchronous virtual care options and to continuous, on-demand, data-informed, asynchronous digital care better matching the demands of living with a relentless 24/7 chronic condition. In this paper we will discuss the critical elements and considerations in designing and implementing successful diabetes digital health tools in clinical practice.


Subject(s)
Diabetes Mellitus , Telemedicine , Humans , Diabetes Mellitus/therapy , Self-Management/methods , Cardiovascular Diseases/therapy , Digital Health
4.
J Med Internet Res ; 26: e55546, 2024 Sep 25.
Article in English | MEDLINE | ID: mdl-39321457

ABSTRACT

BACKGROUND: Approximately 4.5 million people live with type 2 diabetes mellitus (T2DM) in the United Kingdom. Evidence shows that structured education programs can improve glycemic control and reduce the risk of complications from T2DM, but they have low attendance rates. To widen access to T2DM structured education, National Health Service England commissioned a national rollout of Healthy Living, a digital self-management program. OBJECTIVE: The objectives were to understand the barriers and enablers to adopting, implementing, and integrating Healthy Living into existing T2DM care pathways across England. METHODS: We undertook a cross-sectional, qualitative telephone semistructured interview study to address the objectives. In total, 17 local National Health Service leads responsible for implementing Healthy Living across their locality were recruited. We conducted 16 one-time interviews across 16 case sites (1 of the interviews was conducted with 2 local leads from the same case site). Interview data were analyzed using thematic analysis. RESULTS: Three overarching themes were generated: (1) implementation activities, (2) where Healthy Living fits within existing pathways, and (3) contextual factors affecting implementation. Of the 16 sites, 14 (88%) were implementing Healthy Living; the barrier to not implementing it in 2 case sites was not wanting Healthy Living to compete with their current education provision for T2DM. We identified 6 categories of implementation activities across sites: communication strategies to raise awareness of Healthy Living, developing bespoke local resources to support general practices with referrals, providing financial reimbursement or incentives to general practices, promoting Healthy Living via public events, monitoring implementation across their footprint, and widening access across high-need groups. However, outside early engagement sites, most implementation activities were "light touch," consisting mainly of one-way communications to raise awareness. Local leads were generally positive about Healthy Living as an additional part of their T2DM structured education programs, but some felt it was more suited to specific patient groups. Barriers to undertaking more prolonged, targeted implementation campaigns included implementation not being mandated, sites not receiving data on uptake across their footprint, and confusion in understanding where Healthy Living fit within existing care pathways. CONCLUSIONS: A passive process of disseminating information about Healthy Living to general practices rather than an active process of implementation occurred across most sites sampled. This study identified that there is a need for clearer communications regarding the type of patients that may benefit from the Healthy Living program, including when it should be offered and whether it should be offered instead of or in addition to other education programs. No sites other than early engagement sites received data to monitor uptake across their footprint. Understanding variability in uptake across practices may have enabled sites to plan targeted referral campaigns in practices that were not using the service.


Subject(s)
Diabetes Mellitus, Type 2 , Qualitative Research , Self-Management , Diabetes Mellitus, Type 2/therapy , Humans , Self-Management/methods , Cross-Sectional Studies , State Medicine , England , Interviews as Topic , United Kingdom
5.
BMJ Open ; 14(9): e087723, 2024 Sep 10.
Article in English | MEDLINE | ID: mdl-39260843

ABSTRACT

INTRODUCTION: Sickle cell disease (SCD) poses a significant global health burden, particularly affecting individuals in developing countries with constrained healthcare resources. While research on self-management in the context of SCD is emerging, it has predominantly focused on primary studies. The aim of the scoping review was to identify and map self-management needs of individuals living with SCD, the strategies they employed to meet those needs, and the support interventions available to them. METHODS AND ANALYSIS: The review was conducted following the Askey and O'Malley's framework to examine the landscape of SCD self-management research. Searches were conducted in PubMed, Scopus, Embase and Dimensions AI, with additional searches in other databases from inception to June 2024 included. Evidence from 14 studies was synthesised to identify self-management needs, strategies and interventions for individuals with SCD. RESULTS: The review identified diverse self-management needs among individuals with SCD, including knowledge deficits, emotional challenges, physical limitations and barriers to healthcare access. Various self-management strategies were reported, such as nutritional management, psychological coping techniques and proactive healthcare management. Self-management interventions, predominantly delivered by healthcare professionals, focused on providing education, skills training and support to individuals with SCD. The outcomes of self-management interventions consistently demonstrated significant improvements across various dimensions, including self-efficacy, knowledge enhancement, self-care practices and psychological well-being among individuals with SCD. CONCLUSION: This scoping review underscores the importance of addressing the diverse self-management needs of individuals with SCD through tailored interventions and support systems to enhance overall well-being and disease management. Healthcare professionals should prioritise the implementation of multidisciplinary self-management interventions that encompass medical, emotional and social aspects of care to effectively support individuals with SCD in managing their condition. Future research should focus on longitudinal studies to assess the long-term effectiveness of self-management interventions in improving patient outcomes.


Subject(s)
Anemia, Sickle Cell , Developing Countries , Self-Management , Humans , Anemia, Sickle Cell/therapy , Anemia, Sickle Cell/psychology , Self-Management/methods , Adaptation, Psychological , Self Care
6.
BMC Prim Care ; 25(1): 342, 2024 Sep 17.
Article in English | MEDLINE | ID: mdl-39289601

ABSTRACT

BACKGROUND: People with disabilities have numerous challenges in diabetes self-management. Poor self-management leads to the worsening of disability and secondary complications of diabetes. This study was conducted to explore the challenges in diabetes self-management and the factors influencing diabetes self-management among people with disabilities. METHODS: We conducted 16 case studies among people with physical, neurological, visual, hearing, and multiple disabilities who were affected by diabetes. We adopted a thematic content analysis approach to analyse the data. RESULTS: People with disabilities have challenges in adopting healthy diets as they are unable to purchase and consume fruits and vegetables which are costly, unavailable, and inaccessible. They have difficulty in doing physical activity due to lack of inclusive public spaces which are inaccessible, lack of motivation, and dependence on others for their mobility. Irregular drug supply in the public health system and unaffordable cost of drugs hamper adherence to medications. Laboratories are inaccessible to people with disabilities thus preventing monitoring of blood sugars. They have poor quality of life, life with pain and mental health issues, which prevent adoption of self-management behaviors. The intersectionality of age and gender with disability worsens self-management behaviors. Inaccessible health system, poor quality of health care and insensitive health care providers further complicate self-management. CONCLUSION: This study documents the challenges faced by persons with disabilities in practicing diabetes self management. There is a need for public health policy and planning that is inclusive of persons with disabilities to make access to diabetes care universal.


Subject(s)
Disabled Persons , Rural Population , Self-Management , Humans , Self-Management/psychology , Male , Female , Disabled Persons/psychology , Adult , Middle Aged , India/epidemiology , Diabetes Mellitus/therapy , Diabetes Mellitus/psychology , Diabetes Mellitus/epidemiology , Quality of Life , Aged , Health Services Accessibility , Exercise , Young Adult
7.
Aust J Prim Health ; 302024 Sep.
Article in English | MEDLINE | ID: mdl-39325933

ABSTRACT

Background Patient Assessment of Care in Chronic Conditions (PACIC+), included in some Australian guidelines, has been shown reliable for measuring patient engagement and perception of their care in primary care settings. Various studies have focussed on PACIC+ use in specific conditions. This study aims to expand PACIC+ to measure patient empowerment to self-manage their chronic condition and validate it in the broader Australian primary care population. This study aims to evaluate internal consistency and reliability of PACIC+ and six new supplementary items proposed to assess patient wellbeing and empowerment to self-manage their chronic condition. Methods A repeated-measures correlation design study assessed the expanded PACIC+ over three time-points. Particpants were patients with at least one chronic disease, referred by consultant physician, or recruited by advertisement posters in hospital clinic areas. Results PACIC+ (26-item) had acceptable internal consitency (Cronbach's alpha 0.96). Test-retest reliability (Time-1 and 2, P r (48)=0.43; and New supplementary items: Confidence r (48)=0.54; Understanding r (48)=0.62; Support r (48)=0.43; Overall Health r (48)=0.42; Overall Health Change r (48)=-0.31, P =0.03; and Acute Episodes of Care in 1-month r (48)=0.42, P Conclusions The expanded PACIC+ is an improved psychometric tool providing for the patient's voice in a shared health journey. It is a valid, reliable tool to monitor and measure self-management of chronic conditions in Australian population clinic and primary healthcare settings.


Subject(s)
Primary Health Care , Self-Management , Humans , Chronic Disease/therapy , Chronic Disease/psychology , Female , Male , Self-Management/methods , Australia , Middle Aged , Reproducibility of Results , Aged , Adult , Surveys and Questionnaires , Psychometrics/methods , Patient Participation/methods
8.
Musculoskeletal Care ; 22(4): e1947, 2024 Dec.
Article in English | MEDLINE | ID: mdl-39327669

ABSTRACT

OBJECTIVES: Our study endeavoured to develop an online self-management programme facilitated by an interdisciplinary team and to assess its impact on the quality of life, sleep patterns, pain perception, and fatigue levels among individuals diagnosed with scleroderma. METHODS: Twenty-nine individuals with scleroderma completed the programme. The study spanned 8 weeks during which participants received weekly 45-min video sessions. Assessment tools included the Scleroderma Health Assessment Questionnaire (SHAQ) for disease severity and pain intensity, the Self-Efficacy Scale for Chronic Disease Patients for self-management evaluation, the Pittsburgh Sleep Quality Index (PSQI) for assessing sleep quality, the Fatigue Severity Scale for measuring fatigue severity, and the Short Form-12 Quality of Life Scale (SF-12) for evaluating quality of life. RESULTS: Self-management score increased significantly, while fatigue score decreased significantly. Feedback from participants indicated a positive perception of the programme and its content, suggesting its usefulness in managing their condition. Feedback from participants indicated a positive perception of the programme and its content, suggesting its usefulness in managing their condition. CONCLUSIONS: The self-management programme, developed collaboratively by an interdisciplinary team and implemented via telerehabilitation, yielded beneficial outcomes concerning self-management skills and fatigue severity among individuals with scleroderma. Strengthening the interdisciplinary composition of the study team by incorporating diverse healthcare professionals may enhance future investigations. Additionally, we advocate for the repetition of the study employing randomised methodologies and implementing long-term follow-up assessments to further elucidate the programme's efficacy and sustainability over time.


Subject(s)
Quality of Life , Scleroderma, Systemic , Self-Management , Telerehabilitation , Humans , Female , Middle Aged , Male , Scleroderma, Systemic/rehabilitation , Scleroderma, Systemic/complications , Adult , Aged , Fatigue/etiology
9.
Sci Rep ; 14(1): 21774, 2024 09 18.
Article in English | MEDLINE | ID: mdl-39294276

ABSTRACT

The study explore the influencing factors and healthy self-management of MS patients with bereaved relatives after Wenchuan and Yushu Earthquake of their real life; explore difficulties and challenges in the process of self-management; and supply information that could not be sought in quantitative studies. Purposive sampling was used to recruit 36 MS patients who are bereavement population in two earthquakes, and those patients met the inclusion criteria for semi-structured focus group interview. The Nvivo11 software was used to collate and analyze the transcribed data. The main influencing factors of health self-management behavior for MS patients are as follows: the degree of understanding of disease prevention knowledge, emotion management induced by earthquake trauma, the source of disease-related information, access and identification are very limited; ethnic traditional culture, religious beliefs, and production activities and routines before and after the earthquake is an important factor in their healthy self-management behavior. The lack of health beliefs and self-efficacy of MS patients among bereaved families after Wenchuan and Yushu earthquake are key obstacle in their self-management. The overall level of the knowledge of patients' MS prevention, self-efficacy and self-management behaviors are still low. Some positive factors that can be changed including MS prevention knowledge, self-efficacy, social support, and family function. Some negative factors which can be improved afterwards, including negative coping style, traumatic life experiences from earthquake and smoking.


Subject(s)
Bereavement , Earthquakes , Qualitative Research , Self-Management , Humans , Male , Female , Middle Aged , Adult , Self-Management/psychology , Metabolic Syndrome/therapy , Metabolic Syndrome/psychology , Aged , China , Health Knowledge, Attitudes, Practice , Self Efficacy
10.
JMIR Public Health Surveill ; 10: e54402, 2024 Sep 19.
Article in English | MEDLINE | ID: mdl-39298755

ABSTRACT

BACKGROUND: Patients with type 2 diabetes (T2D) in rural China frequently exhibit inadequate diabetes self-management (DSM) and a reduced quality of life (QoL). Social support and self-efficacy are known to influence DSM and QoL. However, the pathways through which social support and self-efficacy impact DSM and QoL among patients with T2D in rural China has yet to be fully elucidated. OBJECTIVE: This study offers a foundation for developing policies in rural chronic disease management, thereby, contributing to the improvement of T2D prevention and control in China and other transitional countries. METHODS: This study used a cross-sectional design, collecting data from a survey conducted between May and July 2021 on DSM and QoL among rural patients diagnosed with T2D in 2 townships in East China. All patients with T2D were enrolled through cluster sampling from the township health center database, and a questionnaire survey was administered by investigators. Structural equation modeling and multiple regression analyses were used to explore the pathways through which social support influences DSM and QoL, as well as the mediating role of self-efficacy. RESULTS: It was found that the DSM score (mean 37.42, SD 7.70) was less than half of the maximum theoretical score. The QoL score (mean 48.92, SD 8.88) accounted for 36% of the maximum theoretical score. Social support directly and positively affected the DSM and QoL of Chinese rural patients with T2D (P<.01); an increase of 1 unit in social support was associated with a direct increment of 0.339 units in DSM and 0.397 units in QoL. Self-efficacy played a positive mediating role (P<.01), further increasing DSM and QoL by 0.147 and 0.159 units, respectively. The mediating effect of self-efficacy accounted for 30.2% and 28.6% of the total effect of social support on DSM and QoL. Furthermore, the family and friend dimension of social support, along with the symptom and disease management dimensions of self-efficacy, were significantly associated with DSM or QoL (P<.01). CONCLUSIONS: The study confirmed the direct and indirect influences of social support on DSM and QoL and elucidated the mediating effect of self-efficacy among rural patients with T2D in eastern China. Interventions should be developed to enhance both social support and self-efficacy, creating a positive cycle of mutual reinforcement to improve DSM and QoL among this group.


Subject(s)
Diabetes Mellitus, Type 2 , Quality of Life , Rural Population , Self Efficacy , Self-Management , Social Support , Humans , Diabetes Mellitus, Type 2/psychology , Diabetes Mellitus, Type 2/therapy , China/epidemiology , Quality of Life/psychology , Female , Male , Rural Population/statistics & numerical data , Cross-Sectional Studies , Middle Aged , Self-Management/psychology , Self-Management/statistics & numerical data , Self-Management/methods , Aged , Surveys and Questionnaires , Adult
11.
Prim Health Care Res Dev ; 25: e35, 2024 Sep 20.
Article in English | MEDLINE | ID: mdl-39300749

ABSTRACT

AIM: This article reports on the development of patient resources for the IMPlementing IMProved Asthma self-management as RouTine (IMP2ART) programme that aimed to encourage patients to attend asthma reviews (invitation letters), encourage patients to enquire about asthma action plans (posters), and equip patients with the knowledge to manage their asthma (information website). BACKGROUND: To improve supported asthma self-management in UK primary care, the IMP2ART programme developed a whole-systems approach (patient resources, professional education, and organisational strategies). METHODS: Linked to behaviour change theory, we developed a range of patient resources for primary care general practices (an information website, invitation letters to invite patients for asthma reviews, and posters to encourage asthma action plan ownership). We elicited qualitative feedback on the resources from people living with asthma in the UK (n = 17). In addition, we conducted an online survey with volunteers in the UK-wide REgister for Asthma researCH (REACH) database to identify where they source asthma information, whether their information needs are met, and what information would be useful (n = 95). FINDINGS: Following feedback gathered from the interviews and the online survey, we refined our patient resources for the IMP2ART programme. Refinements included highlighting the seriousness of asthma, enhancing trustworthiness, and including social support resources. We also made necessary colour and formatting changes to the resources. In addition, the patient resources were updated following the COVID-19 pandemic. The multi-stage development process enabled us to refine and optimise the patient resources. The IMP2ART strategy is now being tested in a UK-wide cluster RCT (ref: ISRCTN15448074).


Subject(s)
Asthma , Primary Health Care , Humans , Asthma/therapy , United Kingdom , Male , Self-Management/methods , Female , Adult , Health Resources , Middle Aged , Surveys and Questionnaires
12.
Nursing ; 54(10): 38-43, 2024 Oct 01.
Article in English | MEDLINE | ID: mdl-39302750

ABSTRACT

ABSTRACT: Self-management of chronic diseases, which increase with age, is vital. This article discusses the benefits of chronic disease self-management and how nurses and other healthcare professionals can provide supportive care. It also presents an evidence-based intervention project that promoted chronic disease self-management among community-dwelling older adults.


Subject(s)
Self Care , Self-Management , Humans , Chronic Disease/nursing , Aged , Independent Living , Evidence-Based Nursing
13.
JMIR Form Res ; 8: e56162, 2024 Sep 27.
Article in English | MEDLINE | ID: mdl-39331954

ABSTRACT

BACKGROUND: Hypertension is a major risk factor for cardiovascular disease, affecting over a billion people worldwide. Mobile health (mHealth) apps have emerged as effective tools for managing hypertension, offering capabilities for monitoring blood pressure, fostering lifestyle changes, and improving treatment adherence. OBJECTIVE: This study aimed to explore patient-users' perspectives on the hypertension care mHealth app Hypertension.APP, focusing on its accessibility, expected benefits, potential risks, and role in hypertension management in Germany. METHODS: A qualitative study was conducted involving semistructured interviews with 20 patient-users of a hypertension care mHealth app, Hypertension.APP. Participants were recruited between January and June 2023 using purposive sampling. Verbatim transcripts were analyzed using qualitative content analysis. RESULTS: Participants primarily discovered the app independently, driven by recent hypertension diagnoses and insufficient information from health care professionals regarding effective self-management strategies for their blood pressure. They valued the app for its continuous monitoring and feedback capabilities, aiding in understanding their condition and making lifestyle adjustments. Risks were perceived as minimal, mainly concerning data privacy and potential overreliance on the app. The app became integral to patient-users' hypertension management by offering consistent information and support. The integration into formal health care was limited, as patient-users felt that health care professionals did not accept the use of the technology or might have even felt intimidated to use it. CONCLUSIONS: Among the sample studied, mHealth apps like Hypertension.APP were valued for their continuous monitoring and educational content, aiding in hypertension management. The findings suggest potential benefits of mHealth apps for effective hypertension care among patients who are health- and digitally literate as well as self-effective. There is a critical need for better integration of these apps into routine health care practices, as perceived by the app users. Given the small and specific sample of this qualitative study, further quantitative research with a broader and more varied participant group is necessary to validate these findings. TRIAL REGISTRATION: Deutsches Register Klinischer Studien DRKS00029761; https://tinyurl.com/r33ru22s.


Subject(s)
Hypertension , Mobile Applications , Qualitative Research , Self-Management , Telemedicine , Humans , Male , Hypertension/therapy , Hypertension/psychology , Female , Middle Aged , Self-Management/methods , Self-Management/psychology , Adult , Aged , Germany , Interviews as Topic
14.
Ann Med ; 56(1): 2392878, 2024 Dec.
Article in English | MEDLINE | ID: mdl-39320983

ABSTRACT

BACKGROUND: Falls are the most common injuries in older adults, and fall prevention is one of the primary measures to achieve healthy aging. Self-management refers to the measures taken by individuals to avoid various adverse factors and health damage to protect and promote their health. This study aimed to explore the factors and measures of self-managed fall prevention among community-dwelling older adults. METHODS: A qualitative study based in two communities under the jurisdiction of Ninghua Street and Shanghai Street was conducted in Fuzhou, China. Semi-structured and face-to-face individual interviews were conducted with 15 community-dwelling older adults. Interviews were conducted by the first and second authors who had participated in qualitative training and were audio-recorded and transcribed. The data were analysed deductively with content analysis. RESULTS: The research revealed two themes with associated sub-themes: 1) influencing factors of self-managed fall prevention, and 2) promoting self-managed measures to prevent falls. CONCLUSIONS: Individual, social support, community advocacy, and road condition influenced self-managed fall prevention. Active exercise, adjusting home environment and clothing, and multi-channel acquisition of self-managed fall prevention knowledge can reduce the incidence of falls among older adults. Identifying these experiences will help older adults improve their awareness of preventing falls, take responsibility for themselves, and reduce the incidence of falls. TRIAL REGISTRATION: Chinese Clinical Trial Register: ChiCTR2200060705; reg. date: June 8, 2022.


Subject(s)
Accidental Falls , Independent Living , Qualitative Research , Self-Management , Humans , Accidental Falls/prevention & control , Aged , Female , Male , China/epidemiology , Independent Living/psychology , Self-Management/methods , Aged, 80 and over , Social Support , Middle Aged , Exercise , Interviews as Topic
15.
PLoS One ; 19(9): e0310961, 2024.
Article in English | MEDLINE | ID: mdl-39325734

ABSTRACT

BACKGROUND: Cardiovascular disease (CVD) is a leading cause of premature death, with hypertension, diabetes, and dyslipidemia as major risk factors. Effective self-management (SM) is crucial for controlling these conditions and improving quality of life. This study examines stakeholders' experiences and expectations of SM education to enhance program development. METHODS: This study employed a qualitative grounded theory approach to explore the perspectives of three stakeholder groups: 19 patients with hypertension, type 2 diabetes, and dyslipidemia, 11 primary healthcare providers, and five provincial health policymakers and managers. Data were collected via semi-structured patient interviews and focus group discussions(FGDs) with health professionals. Coding and analysis were conducted separately using Corbin and Strauss principles with ATLAS. ti version 9.0 software. RESULTS: Most patients were women (68%) aged 50-60 years (37%), with education levels from illiterate to master's degree; 32% had completed primary school. Most were housewives (52%), and 12 had multiple chronic diseases. Healthcare providers included six community health workers and five primary care physicians, with average experience of 12 and 19 years, respectively. Health policymakers and managers averaged 25 years of experience. Patient interviews and FGDs resulted in 12 and 13 subthemes, respectively, with five subthemes common to both sources. These subthemes were grouped into broader main themes, including "effective content design," "effective presentation and delivery," "characteristics and conditions of involved parties," and "educational needs," collectively reflect the central concept of "effective self-management education". CONCLUSION: Although the core concept and its main themes were evident and consistent across stakeholder groups, significant variations in subthemes from each stakeholder emerged. This underscores the importance of considering diverse viewpoints and highlights that, while overarching concepts may seem uniform, exploring the details of stakeholder perspectives is crucial for understanding their nuanced opinions. Effective education should integrate these insights, focusing on tailored communication, interactivity, and active monitoring.


Subject(s)
Cardiovascular Diseases , Diabetes Mellitus, Type 2 , Dyslipidemias , Hypertension , Self-Management , Humans , Female , Middle Aged , Male , Hypertension/psychology , Hypertension/therapy , Dyslipidemias/therapy , Dyslipidemias/psychology , Self-Management/education , Diabetes Mellitus, Type 2/therapy , Cardiovascular Diseases/prevention & control , Adult , Aged , Patient Education as Topic , Risk Factors , Quality of Life , Health Personnel/psychology , Qualitative Research , Focus Groups
16.
JAMA Netw Open ; 7(9): e2433153, 2024 Sep 03.
Article in English | MEDLINE | ID: mdl-39269704

ABSTRACT

Importance: Multicomponent electronic patient-reported outcome cancer symptom management systems reduce symptom burden. Whether all components contribute to symptom reduction is unknown. Objective: To deconstruct intervention components of the Symptom Care at Home (SCH) system, a digital symptom monitoring and management intervention that has demonstrated efficacy, to determine which component or combination of components results in the lowest symptom burden. Design, Setting, and Participants: This randomized clinical trial included participants who were older than 18 years, had been diagnosed with cancer, had a life expectancy of 3 months or greater, were beginning a chemotherapy course planned for at least 3 cycles, spoke English, and had daily access and ability to use a telephone. Eligible participants were identified from the Huntsman Cancer Institute, University of Utah (Salt Lake City), and from Emory University Winship Cancer Institute, including Grady Memorial Hospital (Atlanta, Georgia), from August 7, 2017, to January 17, 2020. Patients receiving concurrent radiation therapy were excluded. Dates of analysis were from February 1, 2020, to December 22, 2023. Interventions: Participants reported symptoms daily during a course of chemotherapy and received automated self-management coaching with an activity tracker without (group 1) and with (group 2) visualization, nurse practitioner (NP) follow-up for moderate-to-severe symptoms without (group 3) and with (group 4) decision support, or the complete SCH intervention (group 5). Main Outcomes and Measures: The primary outcome, symptom burden, was assessed as the summed severity of 11 chemotherapy-related symptoms rated on a scale of 1 to 10 (with higher scores indicating greater severity), if present. Results: The 757 participants (mean [SD] age, 59.2 [12.9] years) from 2 cancer centers were primarily female (61.2%). The most common cancer diagnoses were breast (132 [17.4%]), lung (107 [14.1%]), and colorectal (99 [13.1%]) cancers; 369 patients (48.7%) had metastatic disease. The complete SCH intervention including automated self-management coaching and NP follow-up with decision support (group 5) was superior in reducing symptom burden to either of the self-management coaching groups, as shown by the mean group differences in area under the curve (group 1, 1.86 [95% CI, 1.30-2.41] and group 2, 2.38 [95% CI, 1.84-2.92]; both P < .001), and to either of the NP follow-up groups (group 3, 0.57 [95% CI, 0.03-1.11]; P =.04; and group 4, 0.66 [95% CI, 0.14-1.19]; P = .014). Additionally, NP follow-up was superior to self-management coaching (group 1 vs group 3, 1.29 [95% CI, 0.72-1.86]; group 1 vs group 4, 1.20 [95% 12 CI, 0.64-1.76]; group 2 vs group 3, 1.81 [95% CI, 1.25-2.37]; and group 2 vs group 4, 1.72 [95% CI, 1.17-2.26]; all P < .001), but there was no difference between the 2 self-management coaching groups (-0.52 [95% CI, -1.09 to 0.05]; P = .07) or between the 2 NP groups (-0.10 [95% CI, -0.65 to 0.46]; P = .74). Conclusions and Relevance: In this randomized clinical trial of adult participants undergoing chemotherapy treatment for cancer, the complete intervention, rather than any individual component of the SCH system, achieved the greatest symptom burden reduction. These findings suggest that a multicomponent digital approach to cancer symptom management may offer optimal symptom burden reduction. Trial Registration: ClinicalTrials.gov Identifier: NCT02779725.


Subject(s)
Neoplasms , Patient Reported Outcome Measures , Humans , Female , Male , Middle Aged , Neoplasms/therapy , Neoplasms/drug therapy , Aged , Adult , Self-Management/methods , Self Care/methods
17.
J Med Internet Res ; 26: e53512, 2024 Sep 06.
Article in English | MEDLINE | ID: mdl-39240663

ABSTRACT

BACKGROUND: Inflammatory bowel disease (IBD) poses significant challenges for patients, requiring continuous monitoring and self-management to improve quality of life. OBJECTIVE: This study aims to investigate the viewpoints of individuals living with IBD on the use of information and communication technology (ICT) for the self-management of their condition, with a particular focus on the concept of a "smart" toilet seat as an example of ICT for IBD self-management. METHODS: We conducted an analysis of questionnaire responses obtained from 724 participants. They were encouraged to share their use cases and identify any perceived barriers associated with ICT adoption for managing their condition. To assess their responses, we used descriptive quantitative analysis, summative content analysis, and thematic qualitative analysis. We combined these results in an epistemic network analysis to look for meaningful patterns in the responses. RESULTS: Of the 724 participants, more than half (n=405, 55.9%) were already using various forms of ICT for IBD self-management. The primary factor influencing their use of ICT was their affinity for interacting with technology. Distinct differences emerged between individuals who were using ICT and those who were not, particularly regarding their perceived use cases and concerns. CONCLUSIONS: This study provides valuable insights into the perspectives of individuals with IBD on the use of ICT for self-management. To facilitate wider adoption, addressing privacy concerns, ensuring data security, and establishing reliable ICT integration will be critical.


Subject(s)
Inflammatory Bowel Diseases , Self-Management , Telemedicine , Humans , Inflammatory Bowel Diseases/therapy , Inflammatory Bowel Diseases/psychology , Self-Management/methods , Female , Male , Adult , Middle Aged , Surveys and Questionnaires , Young Adult , Aged , Quality of Life
18.
J Public Health Manag Pract ; 30(6): 805-817, 2024.
Article in English | MEDLINE | ID: mdl-39248720

ABSTRACT

CONTEXT: Rural America faces a dual challenge with a higher prevalence of diabetes mellitus (hereafter, diabetes) and diabetes-related mortality. Diabetes self-management education (DSME) can improve glucose control and reduce adverse effects of diabetes, but certified DSME programs remain disproportionately limited in rural counties than in urban counties. OBJECTIVE: The goal of this study is to examine the proportion of urban and rural adults who report having received DSME using a nationwide, 29-state survey while considering the potential consequences of lower service availability. DESIGN: This cross-sectional study used data from the 2019 Behavioral Risk Factor Surveillance System (BRFSS). Residence was defined as urban (metropolitan county) vs rural (non-metropolitan county). Logistic regression, incorporated survey weights, was used to determine the odds of having received DSME by residence. SETTING: BRFSS is a nationally representative survey, and this study included participants from 29 states that were distributed throughout all regions of the United States. PARTICIPANTS: The study sample consisted of 28,179 adults who reported having diabetes, lived in one of the states that administered the diabetes module in 2019, and answered all relevant questions. MAIN OUTCOME MEASURES: The main outcome measure was whether a participant had ever received DSME. Participants were considered to have received DSME if they self-reported having ever taken a class on how to manage diabetes themselves. RESULTS: Overall, 54.5% of participants reported having received DSME; proportionately fewer rural residents (50.4%, ±1.1%) than urban residents (55.5%, ±1.0%) reported DSME. Rural disparities persisted after adjusting for demographic, enabling, and need factors (Adjusted Odds Ratio  = 0.79; CI, 0.71-0.89). By sociodemographic factors, Hispanic persons vs non-Hispanic White persons and single vs married/coupled individuals were less likely to report DSME receipt (both 0.76 [0.62-0.94]). CONCLUSIONS: Ongoing national efforts addressing rural disparities in diabetes-related complications should target individuals most at risk for missing current diabetes educational programming and design appropriate interventions.


Subject(s)
Behavioral Risk Factor Surveillance System , Diabetes Mellitus , Rural Population , Self Report , Self-Management , Urban Population , Humans , Male , Female , Rural Population/statistics & numerical data , Cross-Sectional Studies , Middle Aged , Adult , Diabetes Mellitus/epidemiology , Diabetes Mellitus/therapy , Self Report/statistics & numerical data , Urban Population/statistics & numerical data , Self-Management/methods , Self-Management/statistics & numerical data , Self-Management/psychology , Aged , United States/epidemiology , Surveys and Questionnaires
19.
BMC Health Serv Res ; 24(1): 1104, 2024 Sep 20.
Article in English | MEDLINE | ID: mdl-39304859

ABSTRACT

BACKGROUND: The integration of telehealth interventions into clinical practice is frequently delayed, hindering the full adoption. Previously, we developed a digital patient education (PE) programme for self-management in rheumatoid arthritis (RA). While the programme design considered crucial factors to ensure the likelihood of success in clinical practice, there is a need for a systematic evaluation of implementation perspectives. The purpose of this study was to explore perspectives crucial to implementation of a digital PE programme in clinical practice. METHODS: The non-adoption, abandonment, scale-up, spread and sustainability (NASSS) framework was used to evaluate the successes and challenges of implementing the digital PE programme. We included a data set consisting of qualitative focus group discussions involving study nurses, rheumatologists, and leaders from rheumatology departments. Data analysis was guided by a deductive content analysis approach. Further we included data from earlier studies pertaining to the programme's implementation, comprising the programme development process, a randomized controlled trial evaluating the programme's effectiveness, and a qualitative study exploring patients' perspectives of the programme. RESULTS: Facilitators and challenges of importance to implementation of digital PE were identified. While a wide range of patients could benefit from using digital PE, future implementation should aim for an even broader group than those studied. Both patients and healthcare providers embraced the technology, and the fact that it did not require specific technical skills enhances its potential for success. However, offering digital PE should be based on individual assessments, and expanding its use will require organizational adjustments. An adaptable structure is needed to accommodate unforeseen care needs that may arise following the use of digital PE at home. There was indication of some reluctance among healthcare providers toward the programme shown by concerns about changing roles, which could impact the adoption of the program. CONCLUSIONS: The design and ease of use of the technology, the program's effectiveness, its availability, and the potential to release healthcare resources may encourage the implementation of digital patient education. Challenges associated with implementing this mode of care pertains to the condition and the patient population, user adoption of the technology, and the organization of patient education. TRIAL REGISTRATION: The study is registered by the Central Denmark Region Scientific Committee (no. 1-16-02-52-19).


Subject(s)
Arthritis, Rheumatoid , Focus Groups , Patient Education as Topic , Qualitative Research , Telemedicine , Humans , Arthritis, Rheumatoid/therapy , Patient Education as Topic/methods , Female , Program Evaluation , Male , Middle Aged , Program Development , Self-Management/education , Self-Management/methods , Adult
20.
JMIR Aging ; 7: e57196, 2024 Sep 05.
Article in English | MEDLINE | ID: mdl-39235831

ABSTRACT

BACKGROUND: Chronic noncancer pain (CNCP) is a major health issue among the older population, affecting multiple aspects of individual functioning. Recently, the use of eHealth solutions has been proposed in supporting chronic pain self-management even among older adults, although some barriers have emerged. Few qualitative studies, with none conducted in Mediterranean countries, have explored older people's experiences and perceptions regarding the types of strategies used to cope with chronic pain and eHealth tools for chronic pain management. OBJECTIVE: This study's objectives were to explore the perspectives and experiences of older adults regarding the coping strategies used to manage chronic pain, the use of digital technologies in everyday life, and the potentiality and barriers in using those technologies for health and pain management. METHODS: A multimethod approach (ie, self-report questionnaires and a semistructured interview) has been adopted targeting older adults (ie, those who are aged 65 to 80 years and presenting different types of CNCP) who are attending a pain therapy center in Italy. Qualitative answers were analyzed using thematic analysis. RESULTS: Overall, participants reported using a variety of pain coping strategies; however, they showed an attitude of resignation to their CNCP condition. Nearly 70% (12/18) of the interviewees referred to using digital technologies for purposes related to health and pain management, mostly involving very basic management activities. The participants' opinions on the useful functions that need to be incorporated in eHealth tools for chronic pain management have been categorized into four themes: (1) specific pain self-management skills, (2) support in organizing various health-related aspects, (3) sharing experiences with others, and (4) increasing pain-related personal knowledge. Conversely, the following potential barriers to adopting eHealth tools emerged: (1) computer illiteracy, (2) negative effects or risks, (3) impersonal interaction, and (4) physical limitations. CONCLUSIONS: The use of eHealth solutions still seems low, often being accompanied by a perceived lack of digital skills or attitude among a sample of older adults from Italy with CNCP. Before introducing innovative eHealth solutions, it would be of primary importance to take action to enhance, on the one hand, self-efficacy in pain management and, on the other, the digital literacy level among older people.


Subject(s)
Adaptation, Psychological , Chronic Pain , Pain Management , Qualitative Research , Telemedicine , Humans , Chronic Pain/psychology , Chronic Pain/therapy , Aged , Male , Female , Aged, 80 and over , Pain Management/methods , Italy , Surveys and Questionnaires , Self-Management/psychology , Self-Management/methods
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